Have You Taken the Ice Bucket Challenge?

Have you taken the Ice Bucket Challenge?

Started by Beverly, MA native Pete Frates and his family on the social sites Facebook and Twitter, the Ice Bucket Challenge’s mission was to increase awareness of ALS (amyotrophic lateral sclerosis/ Lou Gerhig’s Disease) and to raise money for research to cure the disease . Frates, 29, a former Division 1 college athlete with Boston College Baseball, was diagnosed with ALS in 2012.  Now Frates tirelessly spreads awareness of Lou Gehrig’s Disease.

When challenged, participants have 24 hours to either drop a bucket of ice water on themselves or donate money toward ALS research (many choose to do both). Participants then challenge 3 friends to do the same.

Barbara Newhouse, President and CEO of The ALS Association has said,

“This is a creative way to spread ALS awareness via social media and in communities nationwide. We thank Pete Frates and his family for getting so many people involved in spreading the word about ALS.”

Boston sports figures immediately jumped on the #ALSicebucketchallenge, including Bruins stars Brad Marchand and Torey Krug.

Many other celebrities have joined the challenge, including Matt Lauer, Martha Stewart, and Elizabeth Banks. Even 18 members of the Kennedy Clan posted a video of their ice water dumping. The last member to participate was none other than Ethyl Kennedy (wife of Bobby) who called out Barack Obama to take the challenge!

In the spirit of the ” ice bucket challenge”, we now present some information about Amyotrophic Lateral Sclerosis, and a Resounding Health Casebook on the topic for those who want to dig deeper.

What is Amyotrophic Lateral Sclerosis (ALS)?

Amyotrophic lateral sclerosis (ALS) (sometimes called Lou Gehrig’s disease or classical motor neuron disease) is a rapidly progressive, invariably fatal neurological disease that attacks the nerve cells (neurons) responsible for controlling voluntary muscles.  The disease belongs to a group of disorders known as motor neuron diseases, which are characterized by the gradual degeneration and death of motor neurons.

Motor neurons are nerve cells located in the brain, brain stem, and spinal cord that serve as controlling units and vital communication links between the nervous system and the voluntary muscles of the body. Messages from motor neurons in the brain (called upper motor neurons) are transmitted to motor neurons in the spinal cord (called lower motor neurons) and from them to particular muscles.

Krucina ALS1pic3In ALS, both the upper motor neurons and the lower motor neurons degenerate or die, ceasing to send messages to muscles. Unable to function, the muscles gradually weaken, waste away, and twitch. Eventually the ability of the brain to start and control voluntary movement is lost.

What are the symptoms?

The onset of ALS may be so subtle that the symptoms are overlooked. The earliest symptoms may include fasciculations (tiny muscle twitches), cramps, tight and stiff muscles (spasticity), muscle weakness affecting an arm or a leg, slurred and nasal speech, or difficulty chewing or swallowing. These general complaints then develop into more obvious weakness or atrophy that may cause a physician to suspect ALS.

The parts of the body showing early symptoms of ALS depend on which muscles in the body are affected. Many individuals first see the effects of the disease in a hand or arm as they experience difficulty with simple tasks requiring manual dexterity such as buttoning a shirt, writing, or turning a key in a lock. In other cases, symptoms initially affect one of the legs, and people experience awkwardness when walking or running or they notice that they are tripping or stumbling more often. When symptoms begin in the arms or legs, it is referred to as “limb onset” ALS.  Other individuals first notice speech problems, termed “bulbar onset” ALS.

Regardless of the part of the body first affected by the disease, muscle weakness and atrophy spread to other parts of the body as the disease progresses. Individuals may develop problems with moving, swallowing (dysphagia), and speaking or forming words (dysarthria). Symptoms of upper motor neuron involvement include spasticity and exaggerated reflexes (hyperreflexia) including an overactive gag reflex. An abnormal reflex commonly called Babinski’s sign (the large toe extends upward as the sole of the foot is stimulated in a certain way) also indicates upper motor neuron damage. Symptoms of lower motor neuron degeneration include muscle weakness and atrophy, muscle cramps, and fasciculations.

When muscles in the diaphragm and chest wall fail to function properly, individuals lose the ability to breathe without ventilatory support.

The disease does not affect a person’s ability to see, smell, taste, hear, or recognize touch.  Although the disease does not usually impair a person’s mind or personality, several recent studies suggest that some people with ALS may develop cognitive problems involving word fluency, decision-making, and memory.  The cause of ALS is not known, and scientists do not yet know why ALS strikes some people and not others.

Who gets ALS?

More than 12,000 people in the U.S. have a definite diagnosis of ALS, for a prevalence of 3.9 cases per 100,000 persons in the U.S. general population, according to a report on data from the National ALS Registry. ALS is one of the most common neuromuscular diseases worldwide, and people of all races and ethnic backgrounds are affected. ALS is more common among white males, non-Hispanics, and persons aged 60–69 years, but younger and older people also can develop the disease. Men are affected more often than women.

In 90 to 95 percent of all ALS cases, the disease occurs apparently at random with no clearly associated risk factors. Individuals with this sporadic form of the disease do not have a family history of ALS, and their family members are not considered to be at increased risk for developing it.

About 5 to 10 percent of all ALS cases are inherited. The familial form of ALS usually results from a pattern of inheritance that requires only one parent to carry the gene responsible for the disease. Mutations in more than a dozen genes have been found to cause familial ALS.

Is there any treatment?

No cure has yet been found for ALS. However, the drug riluzole–the only prescribed drug approved by the Food and Drug Administration to treat ALS–prolongs life by 2-3 months but does not relieve symptoms.

Other treatments are designed to relieve symptoms and improve the quality of life for people with ALS.  Drugs are available to help individuals with spasticity, pain, panic attacks, and depression. Physical therapy, occupational therapy, and rehabilitation may help to prevent joint immobility and slow muscle weakness and atrophy.  Individuals with ALS may eventually consider forms of mechanical ventilation (respirators).

What is the prognosis?

Regardless of the part of the body first affected by the disease, muscle weakness and atrophy spread to other parts of the body as the disease progresses. Individuals have increasing problems with moving, swallowing, and speaking or forming words. Eventually people with ALS will not be able to stand or walk, get in or out of bed on their own, or use their hands and arms.
In later stages of the disease, individuals have difficulty breathing as the muscles of the respiratory system weaken. Although ventilation support can ease problems with breathing and prolong survival, it does not affect the progression of ALS. Most people with ALS die from respiratory failure, usually within 3 to 5 years from the onset of symptoms. However, about 10 percent of those individuals with ALS survive for 10 or more years.

What research is being done?

The National Institute of Neurological Disorders and Stroke (NINDS) conducts research in its laboratories at the National Institutes of Health (NIH) and also supports additional research through grants to major medical institutions across the country. The goals of this research are to find the cause or causes of ALS, understand the mechanisms involved in the progression of the disease, and develop effective treatments.

Michele R. Berman, M.D. was Clinical Director of The Pediatric Center, a private practice on Capitol Hill in Washington, D.C. from 1988-2000, and was named Outstanding Washington Physician by Washingtonian Magazine in 1999. She was a medical internet pioneer having established one of the first medical practice websites in 1997. Dr. Berman also authored a monthly column for Washington Parent Magazine.

2 Comments

  1. Amanda Avila

    September 23, 2014 at 5:41 pm

    This past summer it seemed that all of my Facebook friends were participating in the ALS Ice Bucket Challenge. Naturally, I was curious about this new trend that was sweeping across social media, so I did some research on ALS. That was when it hit me, this was not just another one of the so-called challenges (e.g. Cinnamon Challenge) that pop up all over the web. This was a genius awareness campaign designed to bring awareness to Lou Gerhig’s disease. This hugely successful campaign got me thinking about the influence of social media on the field of medicine.
    Thinking back to the pre-internet era, health awareness campaigns were carried out by creating posters or having an advertisement on television. These methods were effective enough in their time, but they are not as efficient as current methods which appealed to the audience’s interests. According to IB Times, compared to the previous period, donations increased by 3500 percent for the ALS foundation. With social media becoming a bigger and bigger part of society, it was inevitable that health awareness campaigns moved to this medium. However, what is striking is the effectiveness of the campaign and its ability to capture the attention of millions people as opposed to more traditional methods.
    Medicine is an ever changing field, not only scientifically, but also socially as patient-doctor relationships evolve. Patients don’t only encounter medicine at the doctor’s office, but they find it daily on social media and television. However, this newly found treasure trove of information that is the internet and social media, can be just as negative as it is positive. Along with an influx of helpful information from licensed physicians, there are also those who have no medical training offering their input on the free web. This kind of uncensored content can have negative repercussions by providing fallacious information to the patient. Now that patients have such immediate access to sites, like Web M.D. (which has relatively reliable information) and Yahoo Answers (does not offer information that is verified to be correct) the patient-doctor relationship is dramatically changing. Patients used to go to the doctor to seek their expertise and to be diagnosed. Now, patients walk into the doctor with a diagnosis in hand merely seeking validation and possibly a prescription since they cannot do that themselves.
    With technology advancing so rapidly, it should be interesting to watch doctor-patient relationships evolve along with social media and the internet; as well as witness the development of new technologies to disseminate information and create health awareness. I would also like to see other foundations tap into the potential for social media to advance their cause.

  2. Rebecca Lopez

    October 1, 2014 at 6:55 pm

    A couple months ago, I knew very little about ALS. I had heard it mentioned a few times, but I had never taken the time to learn more about it. However, this all changed when the ALS Ice Bucket Challenge gained popularity on social media. Starting in July, I began to see friends posting videos online of themselves performing this challenge. Within a few days, at least three or four friends were posting similar videos daily. My interest in this new challenge that was gaining so much momentum led me to do some research on the message that the Ice Bucket Challenge campaign was trying to convey to the public. That is when I finally took the time to read a few articles online about ALS.
    As more and more friends completed the challenge, I began to wonder how informed those friends were about ALS and about this specific ALS campaign. Did my friends understand the purpose of the campaign? Did they actually care about helping promote ALS awareness, or were they more concerned about simply completing the challenge and possibly getting a few likes on Facebook in the process? If they were as unfamiliar with ALS as I was, did they do some research before doing the challenge, or did they complete it with little or no information about the disease?
    Regardless of the answers to these questions, there is no doubt that social media has a huge influence on our lives. Not many of us had heard of ALS before the Ice Bucket Challenge became a huge trend in social media, and now everyone seems to be talking about it. It is also impossible to deny the impact that social media has on medicine. Social media not only serves as a medium for presenting medical information, but it also influences the way people view medicine. In my opinion, this Ice Bucket Challenge campaign to raise awareness of ALS owes its success to the social media through which it has been spread in the last few weeks.
    Although campaigns such as these often rely heavily on social media, the rising popularity of social media raises the question of whether or not physicians should engage in discussion with the general public through online sources. Many argue that doctors must maintain their sense of authority and professionalism by avoiding active engagement in discussions regarding medicine on social media. Others argue that it is crucial for physicians to have an online presence because the evolution of technology and of medicine itself requires that doctors adopt new approaches of influencing the patients’ opinion of them and their practice. Perhaps the huge success of the ALS Ice Bucket Challenge will encourage many doctors to see social media differently and to use it as a means of providing the public with reliable and valuable information.

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